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The importance of newborn screening for SMA

Rory and Carolyn met in seminary, fell in love, and got married. They decided to hold off on starting their own family while they settled into their first jobs in North Dakota. After a few years, they moved to Minnesota, where Rory accepted a job as a minister, and Carolyn enrolled in a hospital chaplain residency program. At the time, they did not know how important the decision to move would be for their future family. When they moved, neither North Dakota nor Minnesota had SMA on their newborn screening panel. It wasn’t until March 2018 that Minnesota adopted and implemented newborn screening for SMA, and then several months later, in 2018, Rory and Carolyn’s only son Edan was born.


This topic has 0 replies, 1 voice, and was last updated 2 years, 4 months ago by SMA News Today Moderator.

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      In the first official episode of the new SMA News Today vlog  Dose of DeAnn: A Glimpse Into My Life With SMA, DeAnn Runge shares both her love of sports and introduces viewers to her service dog Roy. In the first half, she talks about how watching sports allows her a sense of freedom, even though she is unable to play sports or engage in many physical activities. She also admires the determination and perseverance of numerous athletes, and relates that to her own life.

      The second half of this video introduces the fun segment “Roy vs. Alexa,” in which DeAnn has Roy and her Amazon Echo Show compete with each other by trying to perform the same task. Here, the task is to flip a coin, and the process is quite different for Roy and DeAnn’s Amazon Alexa device.

      Be sure to subscribe to this video series on our new YouTube channel, and you can also connect with DeAnn here on the SMA News Today forums. Stay tuned for further updates, as this vlog will run twice a month.

      What do you think of DeAnn’s vlog? Is there a topic you’d like her to tackle? Join the conversation right here! 

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